Disney World. The Good, the Bad, and the Migraine

Disney World

Disney World!!!!!!

 

I went to Disney World for 3 days and I could probably write a book on it.  Instead I’m going to focus on three things. The good, the bad, and my migraine.  So let’s begin with the good……

Where to begin. Disney World is called the happiest place on earth for a reason.  If you’ve been following me from the beginning, you know this is not the first time I have written about a Disney princess (A Whole New World?) I have loved all things Disney since I was a child and have been so happy to see my children fall in love all the same.  We spent an entire day at Magic Kingdom.  I had planned and saved like most families do and was eager to see how my dreams would come true for my family.

My personal favorite thing was to ride the rides.  I used to love rides but now enter them with a bit more trepidation.  I fear flashing lights, jerking motions and all those other triggers that come along with my migraines.  I also feared the weather, my diet, the stress, dehydration, and exhaustion.

But Tinker Bell sprinkled her fairy dust on me that day and I lived in a fairytale land.  I did however, prepare.  I had water bottles for all of us that I filled at every water fountain I saw.  I didn’t care about how many bathroom breaks we were going to stop at, we all were staying hydrated.  I also brought portable fans for my family that tends to sweat and me who tends to overhead.  I had snacks galore that were healthy and filling enough to stop us from stopping at every food stand we saw.  I had hats and sunglasses for everyone while we waited in the sun.

I didn’t stress at all because we were on vacation, we were together, and somehow I was feeling OK.  OK for me means super duper terrific on a day like our day at Magic Kingdom.  One of my highlights was watching my children meet the characters and waving to them at the parades. IMG_4327IMG_4332

Is there anything sweeter than a tiny hand waving at floats singing to music?  I found myself waving at everyone also, it was contagious. IMG_2246IMG_2186

I actually got to feel like a normal person that day.  I spun around in tea cups laughing and only feeling dizzy.  Feeling dizzy from your kids joyfully spinning you verses feeling dizzy from standing up on an average day is very different.

I felt shaky from my daughter “steering” a car on a track slamming from side to side and laughing from the depths of my gut.  This shaky is wonderful compared to shaking from pain masked by medication yet not masking muscle contractions.

At the end of the day I felt truly tired.  Not exhausted from fighting a migraine, tired from a long glorious day.  I was able to sing with Ariel in her grotto, the way I love to sing (Feeling better makes me sing)IMG_4360

I flew like I could fly

I flew like I had wings.  I took selfies without thinking how my smile was a mask for how I really felt.

The laughs, the joy, the magic was all from a low pain day.  From the opening song that made me feel butterflies in my stomach to the last firework that gleamed in my eye, I was feeling low pain.  Whatever it was; the adrenaline, the preventatives drugs, the preventative living, or  the intoxicating bubble of love and joy, I call it magic!

I could go on and on and on about how our day at Magic Kingdom was one of the happiest I can remember in a very long time (and I consider myself to live a happy life) but I will stop at saying it was perfect. For those of you who can’t relate to a perfect day, I thought it was impossible for myself.  But just like every perfect day comes reality.  Stay tuned for the bad and migraine party of my trip.

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Axon Optics Migraine Glasses, natural relief

*This post contains affiliate links.  This means if you buy and click from this post I will be compensated by the  affiliate.  This in no way alters my opinion and I only recommend things I use.  I use these often!  I was given a pair to review and have used them often since.

Natural Relief

Before I had children I was a special education teacher.  The years after college; I was teaching, coaching, tutoring, and getting my Master’s degree.  That was all? ha.  At this point my migraines became chronic and pretty much elevated to a new level.  Stress, lack of sleep, noise levels and inconsistent diet triggered me daily.

Along with these were the lights!  I taught in very harsh florescent lighting during the day, coached in a bright gym and sat in front of a computer doing homework or lesson plans.  My eyes were so stressed that I sat in the dark during my free period and had the monitor brightness turned as low as possible.  I didn’t have a smart board at that time but if I had worked with one, I know I would have been pained every time I used it.

This was all before I was given a pair of Axon Optics to review.

I wish so desperately that at that time I had Axon Optics migraine glasses.  They have FL-41 lenses that block  blue-green light which was developed to reduce sensitivity to fluorescent lighting.  They sell a range of products that can fit many eyewear needs.  I found working with the Axon Optics staff easy and simple.  I appreciate this greatly!

I now use them to blog (I’m wearing them now!) and when my photophobia is heightened (which is everywhere!).  I use them everyday.  I wear them making lunches and dinner, doing homework, reading books, doing computer work, going into stores, starting my day (anywhere) and more.  If you see me, I’m wearing them!

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Check them out….. Shop our best-selling migraine relief glasses and sungasses.

 

 

Weather Swings and Migraine

I wish weather swings were as fun as real swings.  The way my kids laugh going up and down, back and forth looks fun.  Instead, the temperature goes up and down making my head sway back and forth.  

Weather is a huge trigger for me!   Living in Cleveland is not ideal for this!  From what I’ve read, it happens most places though, so I’m not going to blame it fully on location.

This week we had a 30 degree shift in two days!  There goes my head.  The barometric pressure squeezes me like a vice.  I have a barometer in my kitchen but I don’t need it because I am triggered before it registers.  My allergies kick up and my head gets so much pressure in it I feel like my eyes are popping out. 

The wind, hail and lightning against my windows gave me generalized pain EVERYWHERE.  The migraine, my joints, my stomach, the fatigue all revolved around the weather.  I’m so much better when it just stays the same.

So how do I stop the weather?  I haven’t been able to figure that one out.  I have no ideas on how to even prepare for the swings when I know it is coming.  I don’t like to take meds to prevent them because I would be doing that several times a day with the amount of triggers I have and the pain state I live.  

So how do I help myself during the swings?  I drink lots of water, keep my rescue meds close by, eat anti inflammatory foods, stay on my sleep schedule, try to take stress in stride and continue to do what I can to brace the not so fun swing I’m about to ride.

Where do you live?  

Do do these weather swings trigger you too? 

How do you deal with weather swings and shifts?

I know I’m not alone! 

Living with pain haze, brain fog, mommy brain and Migraine

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Sometimes, things just look a bit hazy

 

Call it mommy brain. Call it pain haze. When I have a migraine I’m a bit fuzzy to say the least.

I got a migraine after the 4th of July (which was not a surprise, I get a migraine at every holiday) that lasted a few days and was severe. I spent the remainder of my week recovering. So when I woke up again with another migraine I was totally frustrated.

My husband had left for a trip before I woke up and I went directly into survival mode. I took my meds, iced and drank coffee before my kids got up. By the time they got up, I was able to put on a happy face and told myself I was going to make it through the day and to keep on fighting. I talk to myself and my migraines a lot!

So I decided to continue on with what I planned for the day and started addressing thank you notes that I had written for my daughter’s birthday. As I did this, I responded to a wedding invitation. The invitation already had a stamp on it and at this point I realized I had addressed my envelopes backwards. I had reversed the stamp and return address and would not have noticed had I not seen an example of the correct way to address an envelope. Uh, how frustrating.

Was it the end of the world, of course not. It was just an honest mistake but it frustrated me. When I was on preventatives I made mistakes like this a lot (See why I don’t take preventatives). Now that I’m not, I try to keep my head as clear as possible but controlling the pain is a priority. I have many friends who do not suffer and tell me they are the same way with “mommy brain”.

Call it what you will, it’s mommy brain, pain haze, migraine hangover, busy life and fogginess. The problem with suffering is that I never know what’s normal. What is normal anyways? Knowing how to address an envelope is normal, so maybe I’m a bit hazy. I guess I could be called worse.

What have you done in a pain haze?

Migraine is a neurological disease

Migraine is a neurological disease caused by genetics and a hypersensitive brain.

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Photo by Karen Eh, content by Teri Robert

This is an especially important fact for me.  My mom and grandmothers both suffered from Migraines.  I remember my grandpa being very sensitive to me suffering after he saw my grandma suffer on the couch with a wet cloth for so many years.

I  am a mom that worries daily about the fact and  possibility of passing it on to my sweet babies.  It was one of the first thoughts I had when I found out I was having a girl and knowing her chances would be higher.  I observe her constantly for signs of Migraine.  I make sure my children eat well, have a constant sleep schedules, show them stress relief techniques and more.  I try my best to teach them the importance of health but am fully aware that I can not change their genetics that I passed on.

The hypersensitive brain is something that makes me feel sane.  For many many years I felt crazy for the ailments I have.  I always thought it was an abundance of different things, the idea that I wasn’t truly sick or that everyone else felt that bad and it was normal.  Once I learned about the scope of migraine and that it is my brain being hypersensitive, I was able to understand myself.

When I get asked why all the treatments I have tried don’t work, the answer is clear…..I can’t change my genetic makeup.  I can try to control it, prevent it, treat it, and live with it.  I won’t be cured.  This is a fact that many need to understand.  I suffer and many generations suffer.  It’s genetics and a hypersensitive brain.

I am hypersensitive to light, sound, touch, smell, heat, cold, weather, stress, hormones,  and more.  I get triggered by things people would never notice.  Once I’m triggered my brain becomes more sensitive.  Once I have had a migraine, I am at a higher risk for another one since my sensitivity is heightened.  This often throws me into a cycle because of medication rebound and my hypersensitivity not calming down.  It is very complex and difficult to deal with.

The brain is a very tricky thing.  A migraine brain seems impossible!

Migraine World Summit

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The Migraine World Summit April 15-20, 2016 Register for FREE

* Some of the links in this post are “affiliate links.”  This means if you purchase the item from clicking here, I will receive an affiliate commission.  This in no way alters my opinions or reason why I am referring you to them.  I use everything I recommend.

Recently I was contacted by the host of the Migraine World Summit.  It sounds like a great opportunity to get questions answered, a chance to learn about migraines and a way to participate in the migraine community from the comfort of your home.  Many of us have trouble traveling, can’t sit in fluorescent conference rooms or have the funds to participate.  If this is your case, the good news is….it’s FREE and from HOME!

 The Migraine World Summit runs from April 15-20, 2016

Anyone may attend for free, just register here: https://www.migraineworldsummit.com/

Dr. Rigaux, the CEO and inventor of Cefaly (the only FDA-device approved for the preventative treatment of migraines) as well as 30+ other doctors will be speaking. The doctor of Axon Optics will also be a doctor participating. If you don’t know who Axon Optics is, they are migraine glasses to help with  photophobia ! Shop migraine relief eyewear at Axon Optics.  *
I love them!   There will also be experts from Harvard Medical School, the Mayo Clinic, Stanford Medical, the Cleveland Clinic and the International Headache Society. It will feature interviews with Migraine Research Foundation experts, a group that I love and encourage you to support.

Here is a link to the medical professionals who are speaking: http://www.migraineworldsummit.com/speakers

Here is the press release sent to me:

 World’s First Migraine Summit Set to Relieve Pain Experienced by Millions

 Over 30 doctors, professors and specialists have gathered from world leading institutions to help answer some of the most difficult questions for patients in desperate need of relief.

Migraines are more common than diabetes, epilepsy and asthma combined. [i] There are 956,000 thousand migraine attacks every day in the USA[ii] with around 37 million affected.

Carl Cincinnato, host of the Migraine World Summit, sees how migraine can cripple an individual over time:

“Migraines can be devastating to someone’s quality of life. It can affect not only their physical well being, but their relationships, family life and in severe cases their ability to keep a job and have a career.

There is still a stigma associated with migraine. Many people feel guilty or ashamed to admit they have a migraine. Migraines can also lead to depression and anxiety as many struggle with the isolation, lack of progress and lose hope.

Research shows a direct link between the frequency of migraine and a person’s quality of life.”

Migraines were recently found to be the 6th highest cause of disability worldwide in terms of years lost to disability [iii] A severe migraine can be as disabling as quadriplegia or active psychosis.[iv]

Despite the prevalence of migraine, it remains under diagnosed and under treated with less than 50% of patients consulting a physician.[v]

For those who do seek help, finding the right doctor can be difficult.

Just 4 hours are committed to headaches disorders in undergraduate medical training worldwide.[vi]

The US is one of the few places where there are subspecialty certifications for headache medicine, yet there is only one headache specialist for every 85,000 patients.[vii] This shortage is consistent worldwide.

The Migraine World Summit provides unprecedented access to dozens of experts for those suffering from this debilitating disorder.

Dr Pierre Rigaux, CEO of Cefaly Technology and inventor of the innovative Cefaly®, the only FDA-device approved for the preventative treatment of migraines, is one of the speakers at the event.

Specialists require referrals, patients may incur significant costs and there can be waiting lists when treating migraines.  The Migraine World Summit is a great opportunity to jump the line and get into the room with doctors to hear the latest best practice and approaches being used from some of the best in migraine.

[i] Headache Disorders – not respected, not resourced. All-Party Parliamentary Group on Primary Headache Disorders. 2010.  Migraine Trust

[ii] Steiner TJ et al. The prevalence and disability burden of adult migraine in England and their relationships to age, gender and ethnicity. Cephalalgia. 2003;23(7):519-527.

[iii] Steiner, Timothy J., et al. “Headache disorders are third cause of disability worldwide.” The journal of headache and pain 16.1 (2015): 1-3.

[iv] Blumenfeld, A. M., et al. “Disability, HRQoL and resource use among chronic and episodic migraineurs: results from the International Burden of Migraine Study (IBMS).” Cephalalgia 31.3 (2011): 301-315.

[v] Pavone E et al. Patterns of triptans use: a study based on the records of a community pharmaceutical department. Cephalalgia. 2007;27(9):1000-4.

[vi] World Health Organization. Atlas of headache disorders and resources in the world 2011.

[vii] Mauser, Emily D., and Noah L. Rosen. “So many migraines, so few subspecialists: Analysis of the geographic location of United Council for Neurologic Subspecialties (UCNS) certified headache subspecialists compared to United States headache demographics.” Headache: The Journal of Head and Face Pain 54.8 (2014): 134

 

 

The Excedrin Migraine Experience commercial

I have to say, I have not been happy with Excedrin Migraine commercials and advertising over the years.  I have not taken over the counter medication for my migraines in years.  Once I discovered it was giving me rebound headaches and causing my migraines to cycle, I stopped.  They never worked for the intensity of my migraines anyways, so it was not a problem to stop wasting my money.  I have been insulted by their, “shhhh mom has a migraine, not anymore now that I took an Excedrin Migraine” commercial.   It extends the stigma by saying I can pop one pill and my neurological disease will go away.

Things seem to have shifted in their advertising and understanding of migraine sufferers a bit more.  They have made a series of migraine experiences for a mother, a husband, a friend and a co worker.  This allows the person to experience the visual part of migraines a bit more.  Telling and seeing are different.  The experience cannot provide the pain that comes along with the visual disturbances but it does a good job of trying to break down some doubt in the “it’s just a headache” world.  I honestly would not want my loved ones to experience the pain that I have.  It would be ethically wrong to voluntarily torture someone.  The pain is an indescribable excruciating horror scene!   The focus of these commercials is on some of the other stuff that goes along with the pain. 

Overall, I have to say, bravo Excedrin Migraine.  You are moving in the right direction.  It’s more than just a headache.  It’s more than just a pill.  It’s my life.  It’s breaking down stigma, explaining and being judged by others, and suffering daily.  If you have a loved one, a spouse, a coworker, a friend or someone who may better understand by these commercials, please feel free to share it with them.

The Migraine Experience